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Children's Mercy treats teens with mysterious pain

Friday, December 20, 2013 | 6:00 a.m. CST
Physical therapist Brandi Dorton, left, times 13-year-old Albiera Camaiora of Lima, Peru, as she holds a plank position for 30 seconds during therapy for amplified pain at the Don Chisholm Center of Children's Mercy Hospital in Kansas City. Camaiora graduated from the Rehabilitation for Amplified Pain Syndrome program at the hospital. In some medical circles, a diagnosis of Amplified Musculoskeletal Pain Syndrome is as controversial as its symptoms are odd.

KANSAS CITY — The girl who dives like a dolphin is in pain, and her parents have no idea what to do.

One moment, Albiera Camaiora — Albi — is a stellar free-diver, a 13-year-old from Lima, Peru, with the lung capacity to hold her breath for more than two minutes and the daring to plunge deep beneath the ocean surface, up to 70 feet, unaided by scuba gear.

She is a driven athlete. Then, in February, everything changes, The Kansas City Star reports.

"One day, she falls down in the shower," her mother, Claudia Calderon, explains at Children's Mercy Hospital.

The injury is nothing, a trifling hip bruise.

But soon after, while on a skiing trip to Colorado, Albi is struck by crushing headaches from the back of her neck to her eyebrows. Her father and mother think it is the altitude or maybe a sinus infection until the pain spreads to her shoulders and back. On the return flight to Peru, it grows worse.

"That's when we start a nightmare," her mother says.

Over the next weeks and months, Albi sees more than 40 physicians from around the world. By the time she flies in August to a children's hospital in Miami, the pain has spread to her entire body. Unable to walk without horrendous difficulty, she uses a wheelchair. She can't lift her arms. Her mother must spoon-feed her and brush her teeth.

"We are desperate. We are afraid," her mother says. "... You stay awake at night. You don't know what's going on. It's horrible."

Then comes a call from a relative, a journalist in Los Angeles who has heard of a handful of children's hospitals nationwide that see kids with symptoms like Albi's. Within a day, in mid-September, the seventh-grader and her parents are on a plane to Kansas City.

"As of today, we are done with the wheelchair," rheumatologist Cara Hoffart, 34, tells the family at Children's Mercy.

Hoffart knows what is wrong.

In some medical circles, a diagnosis of Amplified Musculoskeletal Pain Syndrome is as controversial as its symptoms are odd.

At Stanford University's Lucile Packard Children's Hospital, Elliot J. Krane, a leading professor of anesthesiology and pediatric pain, insists the best way to think of amplified pain syndrome is as a catch-all phrase, not a diagnosis.

"It's a term to describe kids with widespread pain when they can't figure out what's causing it," he said.

Other names include Widespread Pain Syndrome, Pain Associated Disability Syndrome and Diffuse Idiopathic Pain Syndrome, with "diffuse" referring to its bodywide nature and "idiopathic" going directly to its mystery, meaning "of unknown origin."

It's unclear how many children are affected by this kind of bodywide chronic pain. But in the last decade, several hospitals have started programs to treat them. Children's Mercy opened Rehabilitation for Amplified Pain Syndrome in March, basing it on a similar program at the Children's Hospital of Philadelphia.

Other programs exist at the Mayo Clinic in Rochester, Minn.; Boston Children's Hospital; Stanford in California; the Cleveland Clinic Children's Hospital; and a few other hospitals.

Their patients, like Albi, tend to be driven, type-A, perfectionist teens. Girls typically are more affected than boys.

After a minor injury, or even a sudden perceived failure, they develop symptoms that doctors think have as much to do with psychology as physiology. The condition appears to exist at the nexus of illness and culture, suggesting that today's stressful, high-expectation teen environment plays a noxious role.

Often it's a small hurt that temporarily hobbles them but causes high-functioning teens suddenly to feel imperfect or vulnerable. Stress kicks in, triggering a cascade of events in the nervous system. Hormones flood the body and, figuratively, set the nerves on fire. What began as a small pain grows and spreads.

Soon more doctors are called in. Tests show nothing physically wrong. That's often when parents and teens are told the pain is purely psychological.

Hoffart likens it to bleeding ulcers. They, too, can be induced by stress, but that doesn't mean the sore eating away at the gut isn't real.

The more doctors these children see, the thinking goes, the more their stress mounts. They miss school and fall behind. They see parents worry and medical bills mount.

The nerves in the body, already on high alert, become even more sensitive. What started out as an insignificant hurt amplifies to incapacitate the entire body.

The hospital's program treats children with less severe symptoms at an outpatient clinic, but it has three spots in its most concentrated daylong program for severe cases.

The program attacks the pain on three fronts: Exercise, "desensitization" therapies and cognitive and family therapies to identify and address the psychological roots of stress.

"I tell our kids they have weird pain. We do weird things," Hoffart said.

Their methods are specific, slow and controlled. But the last thing they do is steer clear of the pain.

"If it hurts to do something, that's what we tell them you should do," Hoffart said, which is one of the prime reasons they tell kids on day one to get up from their wheelchairs.

Hoffart also takes kids off their pain medications. Nor does the program use pain medications or nerve blocks during therapies, an aspect of the program that makes it more controversial than others that do use medicines. It also tends to reflect differences in philosophy in programs run by rheumatologists, such as Hoffart, and those run by anesthesiologists.

At Stanford, the anesthesiologist Krane, for example, thinks "there is a role for medications from time to time."

"For some kids, physical therapy is just too painful, and you can't do it," he said. "I think it is cruel to subject a child to painful physical therapy without a nerve block."

Hoffart maintains that for most kids, these medicines have already failed to work.

Using balls and baskets, cones and other equipment, the kids are asked to walk up and down stairs, do pushups and knee bends, walk on treadmills.

Desensitization therapies — massages, touching, rubbing, showers, hair brushing — help the kids develop a tolerance to pain that, gradually, causes the pain to subside.

Meanwhile, the yoga, music therapy, art therapy and personal counseling are geared to find ways to reveal and deal with pressures and psychological stress.

Less than six weeks after she entered the program in a wheelchair, Albi left able to shower, dress, brush her teeth and even jog.

At Albi's "graduation" in October, her mother told Hoffart and her team, "You made a miracle."

Albi said that when she got home, she had a plan.

"I'm going diving again," she said.

 


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